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Wednesday, September 17, 2014

It's been a while, and I hate that. But life takes precedence over blogging, and that's okay. I do have a lot more to tell about our cancer journey and what God has done through it, but it will be a little bit before I can get to it.

I miss blogging so much. I miss my online friends! It's amazing the road I've been on for the past six years (SIX!!!) since I started Butterfly Genes. A road I wouldn't have chosen for myself, but one that I know the Lord has carried me on.

I will be back soon to finish our story about Michael's thyroid cancer, and tell about what's been going on with me personally. Until then, I'll leave you with this.

It's very thought provoking. Actually it's just Jonathan and Beanie playing. But you know, whatever. :)

Y'all. Shopping for meals that contain no or very low amounts of iodine is NOT FUN. I had to buy non-iodized salt, but that wasn't a big deal. However, the rest WAS. No dairy. No egg yolks. No processed food. No pasta. No seafood. No soy. No restaurants. I remember standing in the grocery store in tears because I couldn't find natural, no salt peanut butter (I did find some at another store, thankfully). One of the most expensive changes was the chicken we had to buy. Any recipes we have that call for beef we just substitute venison in them, so it was okay to have. We know where that meat comes from and Michael processes it himself, not adding anything to the meat, so it was safe. The chicken we had to buy, however, made up for us having our ownpaprika" It was over double what we normally pay!

Suppers weren't bad at all, once I could find the things at the store I needed to buy. In fact, we really enjoyed the recipes. I made a Pinterest board called LID where I would pin recipes I knew fell into the "acceptable" category. I found several that we've incorporated into our normal menu rotation, particularly the roasted corn (if you click that link and scroll down to the picture of the corn, you'll see how to do it...so easy!).

Michael could have any fresh vegetables, but had to limit his consumption of spinach and beans. We were graciously given home-canned tomatoes by my sweet friend Becky as well as my second mom, Margie (I hate using the term "step-mom" when it comes to her). Those tomatoes made the difference. I made chili and sloppy joes with them and almost prefer those recipes over my tried-and-true ones.

I tried new things with fresh and frozen veggies and discovered that fresh vegetables weren't much more work than canned, and they t
asted sooooo much better! My favorite way to prepare green beans now is to pan-fry fresh beans. You should try it!

I also had to make up my own seasoning mixes such as taco seasoning, chili powder, and Greek seasoning. We now use the taco seasoning exclusively...it's SO much better (and better for you!) than the store bought kind.

Wednesday, February 26, 2014

First of all, I have to stop for just a minute and let y'all in on a secret. I've called my husband Sound Man since the start of my blog in 2008 to have some sort of anonymity. He has since started his own blog, and uses his own name in his profile. So, I'd like to start using it, too.

After Michael was released from the hospital, we began the long wait before he could take his radioactive iodine treatment. RAI is given to thyroid cancer patients to kill any remaining thyroid tissue that's left after surgery. At a follow up appointment, the doctors explained what would happen in the days leading up to the treatment, and why.

Michael would be on a low-iodine diet for two weeks, then he would take the RAI. The reason for the LID was to starve his body of iodine, the mineral that keeps your thyroid healthy. They wanted any thyroid cells that might remain in his body to be so hungry for the iodine that when he took the "poisoned" iodine, they would just soak it up like a sponge. This, of course, would kill any remaining cells.

Armed with knowledge and a starting date for our diet and treatment, we left the doctors' office confident that we could handle this. Michael was to have a couple of shots of medicine that would allow him to stay on his Synthroid, the medicine that replaces your thyroid hormone so your body still functions as though it has a healthy thyroid. By staying on Synthroid, he wouldn't feel as bad as he would if he had to come off of it. The shots he would be taking would force his TSH (thyroid-stimulating hormone) level to go up to the proper level before he took the RAI. His TSH level was supposed to be over 35 (normal is around 4.5. Yes. I said 4 point 5. His was supposed to get up to 35. That's THIRTY-FIVE. Anything over about 7 makes you start feeling yucky. I know this from my own personal experience). Without the shots, he would have had to come off of his Synthroid in order for his TSH to get to that level. Confused yet? Welcome to the club.

The day before his first shot was scheduled, just a few days before he was to take his radio-active iodine treatment, we found out that there was a mix-up with the company that makes the shots and our insurance company. We, along with the sweet, precious girls at Dr. Amanda's office, scrambled to try to find a solution to the problem so that Michael could get the shots and have the RAI as scheduled. To make a very long, very frustrating story short, it didn't happen. We were so disappointed. Michael would have to come off his Synthroid in order for his TSH level to get to the point it was supposed to in order for the RAI to work.

We had been on the low-iodine diet for two weeks before hearing he would have to come off the Synthroid, and were already really ready to get back to a normal diet. The recipes were really delicious, but I wasn't limited like Michael was. I could have dairy, and eggs, and processed food, etc. during the day, but he couldn't. Supper was great, but he really struggled with finding food that was worth eating for breakfast, lunch, and snacks. I was making homemade bread (allowed...I made a TON of it!), so that was enjoyable for him, but other than that, he was really ready to get back to normal food.

When the news came that he'd have to wait for another three weeks for his TSH level to get over 35 to take the RAI treatment, the realization hit us that we'd have to continue the LID diet. Talk about depressing. The day after Michael stopped taking his Synthroid, he started feeling so bad he would have to stop working (he was able to work from home for a while) for a little bit and get back to it later. He felt awful. AW. FUL. It was hard for him to get out of bed in the mornings. By the end of the three weeks, it was all he could do just to get up and get ready to go to the doctor to have his blood tested. Feeling this bad, along with continuing pain from the surgery, was wearing him down.

During all this time, we asked everyone we could to pray for his level to be over 35 after the three additional weeks. Dr. Amanda didn't have much confidence that his level would be over 35 after just three weeks. She said it normally takes five weeks for it to get so high. So when the results came back, even though we had prayed so much for it to be the right level, we were nervous. Well, as He had ever since Michael first found out he need to have his thyroid seen about back in January, the Lord did His work. Michael's level was 85. Yes. EIGHTY. FIVE. Need I remind you normal is 4.5? No wonder he felt horrible! As bad as he felt, we were ecstatic that we were finally given the go-ahead for the RAI treatment. We were praising God for days!

Monday, February 24, 2014

Before I go into the waiting game we played before Sound Man's radioactive iodine treatment, I have to write a post dedicated to the ones who helped us through those first hard days in February and March 2013.

First of all, I have to say that I realize that I am truly, truly blessed to have my Daddy and second-mom, Margie, living 15 minutes from me. I also have a sister who lives just a little over an hour away. I am also blessed to have a church family that loves my family and me so very much.

They are the ones that prayed (and still are!) for us when they heard the diagnosis. They are the ones that kept me company during his surgery. They are the ones who came while he was in the hospital, some even bringing meals for me. They are the ones who kept my son, keeping him distracted during a very scary week for him. They are the ones who fed us for days after we came home. They are the ones that supported us financially.

Friday, February 21, 2014

Because y'all are precious people and several of you have expressed concern about us, I need to say here that what I'm writing about started a year ago...we are not going though this as I'm writing. It's taken me this long to get the gumption to revisit it all. To read about our cancer journey so far, go to these posts:My Husband's Cancer"Trust"The Diagnosis

Note: I go into a little bit of detail on my husband's surgery. Just wanted to give you fair warning. Nothing gory, I promise. Hee hee.

As we waited for a surgery date, Sound Man and I took turns being the strong one. There were days when I just felt like I couldn't take the stress of waiting and worrying anymore, and Sound Man would be right there with encouraging words. The phrase the Lord gave him was what his testimony was every day.

"It will be okay. Getting 'from here to okay' is going to be tough, but it will be okay."

On the days when he was weak from stress, thinking the cancer might be spreading, and wanting an answer, I was there to remind him that it was going to be okay. "We have a hope that people without the Lord can't imagine. It WILL be okay. Don't give up hope!"

We knew the doctor was going to be out of town in March sometime, so the problem, and the reason we were waiting so long for an answer, was where and when to schedule it when there would be no interruptions in Dr. Jeffrey being his only doctor. What added to the stress was having to wait until a surgery date to coordinate Kiddo's whereabouts during surgery and hospital time, who would see to Jonathan (our Golden Retriever), how long I would be out as director of our church's homeschool program, etc. Without knowing when the surgery was, none of that could take place.

So when the doctor's office called one day and said the surgery might be the very next day, I think my brain imploded. I couldn't think of one productive thing to take care of, so what did I do? I bought new door mats and cleaned my purse out.

Yep. Reeeeeal productive. But it turned out all the anxiety and...uh..."productivity" I had was for naught. Surgery wasn't scheduled for the next day. Sigh.....again we waited.

FINALLY we found out that it would be on March 20th. A month from the time we had found out it was possibly cancer.

The day of the surgery, we got to the hospital about 5:00 a.m., with surgery scheduled to be at 7:00. Before they went back, the doctor came in and told us he had already been praying over this surgery, which made our hearts so happy. Then Sound Man did something he hadn't told me he was going to do. He asked Dr. Jeffrey if he could pray for HIM.

As I sat there beside my husband's gurney, I had to hold my hand over my mouth to keep from sobbing as he prayed for the doctor's hands and skill to get every bit of the cancer out. How he thanked the Lord for providing a doctor who cared enough to pray for his patients. How he knew that this was going to be okay in the end. What an amazing man I have.

After he prayed, they wheeled him out and I kissed him goodbye, then headed downstairs for the long wait. The doctor had said it could be up to an eight hour surgery, so I came prepared with everything I could get my hands on to keep me occupied. My precious bestie, Kat, came and sat with me most of the day, and even brought me breakfast and paid for my lunch.

My in-laws came and stayed for a little while, but since my father-in-law was dealing with terrible, debilitating back pain, they couldn't stay for long (thankfully he was able to go on disability and get an implant that relieves some of his pain!). Our worship pastor came after Kat left, and visited for a bit, but by that point I was getting really antsy for the surgery to be over. The nurses would call every hour and let me know he was doing great, and for that I was so thankful. But I wanted to see HIM!

About 3 p.m. I looked up from my magazine to see Dr. Jeffrey coming toward me, still in his scrubs. He told me they took out Sound Man's thyroid, which took about three hours, as well as 30 lymph nodes and his jugular vein, since some of the nodes were attached to it. He felt the risk of taking them off was greater than just taking it out. That's what took the longest...5 hours! He had told us that his scar would be minimal because he could stitch him up from the inside, but because he had to take out his jugular, he had to use staples instead in case he had a bleed and the doctor needed to get back in there in a hurry...just unzip!

Dr. Jeffrey told me they also took out some muscle tissue where the cancer had spread, but other than that, every sample they sent away to the pathologist came back negative for cancer, and he was pretty certain they had gotten it all. As soon as he said those words, again, I fell apart. So this was the second time I'm sobbing in front of this doctor in the same day. I'm sure he thinks I'm a basket case.

Sound Man rooting on the Memphis Tigers in the hospital

After spending four days in the hospital we were finally allowed to go home, and then the real waiting game started.

Wednesday, February 19, 2014

After waiting all weekend to hear from the pathologist, I had convinced myself that it wasn't cancer. Maybe it was a false sense of security, or maybe I was trying my hand at "helping" God with the answer I wanted it to be.

But as Kiddo and I were running errands, I got the phone call from Sound Man. He was crying.

"It's cancer."

Even though I knew it was a probability, when the reality of those words sank in, I just couldn't believe it. I listened to my husband tell me that the doctor had called him from her cell phone immediately after getting the news from the pathologist. He said that she wanted him to come in to see her husband, who was an ear, nose, and throat doctor (as well as neck surgeon) in the same office as hers, and to call him immediately to see when he could see him. Within two hours of hearing the news, we were in the surgeon's office listening to what was going to happen to my husband over the next several months.

"Surreal" doesn't even begin to describe how our lives felt.

Dr. Jeffrey (as we call him...his wife is Dr. Amanda. "Dr. Cunningham" would be kind of confusing in their office because they are both Dr. Cunningham!) was very matter of fact, gave us all the statistics we could possibly need, told us exactly what the surgery would entail, gave me Kleenex when I broke down, and gave us as much hope as we could humanly ask for. He told his assistant to make sure to schedule the surgery at our local hospital when he would be in town, because HE wanted to be the doctor to see Sound Man every time a doctor was supposed to see him. We left his office unsure of when the surgery would be, but feeling better about the diagnosis and feeling GREAT about the surgeon.

Thyroid cancer is one of the most treatable forms of cancer, if not THE most treatable. If the lymph nodes had not been involved, he would just have taken the thyroid out, Sound Man would take the radioactive iodine treatment, and that would be it. But the lymph nodes were involved, so it was going to be more involved that just taking out a simple gland. Much more involved.

He said it would be called a "radical neck dissection," and he would take out not only the thyroid, but also all the lymph nodes on his right side, and possibly his jugular vein, depending on what he found when he got in there. Um...I had no idea you could live without your jugular vein, but evidently you have one on both sides of your neck.

Monday, February 17, 2014

You know how in the past few years people have been adopting a word for the year? After 2010, my year for 2011 was "peace" because that's what my soul craved...peace. In 2011 we struggled financially; some as a result of how our 2010 had been, some of our own stupidity. We weren't trusting God with our finances, and I was a nervous wreck. I held so tightly to our money situation that the thought of letting go of it and putting God first in our finances scared me to death. So, in a giant effort to give God complete control of me AND our money, my word for 2012 was "trust." I had no idea that word would be crucial in 2013 as well.

Sound Man called me after his initial endocrinologist's appointment with these words:

"What do you mean most likely? When will you know? How does she know? Does she know what she's talking about?"

All these questions were either aimed at my husband or bouncing around in my head, trying to understand what I had just heard.

The first thing the doctor had done was feel around his thyroid on the outside. She told him she could see the lump even just looking at him. We never noticed anything because for one thing, he had NO SYMPTOMS, and for another thing, it had grown so gradually we just didn't notice it. After she did an ultrasound finding exactly where the mass was, she did a needle biopsy of his thyroid. Sound Man said she came back in with bad news: the cells looked cancerous. She was going to have to do another needle biopsy of his lymph nodes to see if they were cancerous, but that test was going to have to be done by a pathologist. She told him we wouldn't find out until probably two days from then, which would be Friday. He left feeling like a human pin cushion. That's when he called me.

There was absolutely nothing we could do but wait to find out what the pathologist's report said. On Friday, we waited and waited, and finally Sound Man called the endocrinologist to see if they had heard anything. They told him that the pathologist's office was closed that Friday so it would be Monday before we heard anything. MONDAY. Which meant the entire weekend not knowing if my husband had cancer or not. Not knowing if it was growing, spreading to other areas of his body.

We were scared.

Yet...

We knew his life was held in much safer hands than our own. Even during that awful, awful waiting period, we trusted our God. We prayed off and on all weekend. Needing time alone, we went to dinner that Saturday night and as we held hands and looked at each other I had a peace that God was in control. I knew that He loved my husband far more than I could even possibly dream of loving him, and that no matter what the outcome, He was still trustworthy.

Friday, February 14, 2014

I have tried several times to write this post over the past year, and every time (including this one) I have been at a complete loss for what to say. I've started to forget things that I've seen God do, and I don't want to do that. A precious friend told me I needed to be journaling everything that's happened, and my first thought was, "Yeah, okay, I can get a notebook and blah, blah, blah." Then it hit me that I've had an ongoing journal since 2008. I can't believe I've been blogging for almost six years. Six years! What a ride my life has been since that first post.

Kiddo, me, and Sound Man at the Mighty Mississippi, summer 2013

If you have read my blog for any length of time, or if you know me personally, you know my mother passed away from breast cancer in 2010. That year was the hardest year of my life. It started with health issues for me, then a car wreck that totaled our van, then Shadow had to be put down, Momma's health steadily declined, and she passed away on October 5th. When New Year's Eve came that year we ALL were saying, "Goodbye, 2010! Don't let the door hit you in the rear on your way out!"

I didn't think a year could railroad me like that ever again. Until last year.

Our insurance gives us a discount for getting physicals every year, and even pays for the physical. We can't say no to that! It was through those physicals that I first found out that my thyroid was out of whack in 2010. I had a couple of nodules that eventually disappeared after getting on Synthroid, the thyroid replacement hormone.

So when Sound Man came home from his physical last year in January and said that the doctor that had done the ultrasound on his thyroid (they ultrasound your internal organs, corotid artery, thyroid, etc) had found a mass on his thyroid that needed to be checked out, I didn't think a THING about it. Like, not. a. thing. I didn't even pray about it going away, because I just knew it was a nodule like mine had been, and those had been a non-issue. Little did I know this is where we started seeing the hand of God working.

His original endocrinologist appointment had been scheduled for April...4 months away. In late January or early February, he got a call from the endocrinologist's office saying they had had a cancellation and wondered if he would like to come in much earlier than his original appointment, February 19th. Yet another God moment. Again, I was not worried one bit, and for me, that's saying something. I'm a natural born worrywart.

During the time between the call and his appointment, he caught the flu. Got over it (or so we thought), then had a horrible relapse two weeks later which landed him in the ER for eight hours. Turns out he had swine flu. It's a miracle Kiddo and I didn't catch it. At this point we thought it couldn't get worse.

The day of his appointment, I expected him to call me after his he was done and let me know what the doctor said. When it got to be about 2 hours after his appointment time, I started getting a little concerned, but chalked it up to the office being busy (she's my endocrinologist, too, and I know how crazy the office can be).